My life as mamaDoctor's Orders?
Not always, we recently as parents were faced with a big decision, with the help of our community and gut feeling.. we decided to go against what our doctors were recommending for Argon & Aldridge.
Eye exams will need to be done twice per year for the babies.
I noticed early on, that our boys had a bit of Nystagmus
Nystagmus [a condition where the eyes shake involuntarily] At that appointment, we were told that they needed to be seen by a pediatric ophthalmologist. You would think with all of the doctors floating around in the NICU, that a simple eye exam would have been done during the 38 days that we were there, but at their birth hospital, the preemies aren’t seen by ophthalmology unless they were born before 31 weeks. Otherwise, their condition would have been diagnosed sooner. So we took the trip to Salt Lake City.
but, there was one thing that really, really, bothered me about the experience.
Call it a mother’s intuition
This was our very first appointment at The Moran Eye Center. This is an extension of the University of Utah’s main hospital. It was a beautiful facility with very nice people, but, there was one thing that really, really, bothered me about the experience. When we arrived at the office, the twins’ needed to have their eyes dilated three times in order to be seen. Once they were ready to go, the doctor asked me to leave the room. This is standard according to the staff there, they said it was because sometimes, the eye exam can seem painful for the baby because the doctor will need to use metal speculums to keep their eyelids from closing. I don’t leave my children alone with anyone that I am not familiar with, and so I asked to stay. They let me, but they had a nurse swaddle each baby and hold them while the exam took place.
While the doctor was examining the twins, one by one.. she talked to the nurse who was noting the information in the chart. The doctor didn’t seem annoyed at the time, but after the appointment, I realized… that I hadn’t learned anything. That is rare for me, I tend to try and soak up everything from each appointment and the eye is something that I just don’t know anything about – but was eager to learn about.
At the appointment, the doctor turned to me and let me know that the twins’ needed to have “an under anesthesia eye exam.” I didn’t decline the suggestion aloud, but in my head – I thought to myself, there is no way I’m going to put these babies under for an eye exam. It isn’t life threatening, but because they don’t have standard genetics, I just don’t feel safe about it, also they were both so little, I couldn’t imagine pacing the hospital hallways wondering if they were going to wake up or not, I’ve heard horror stories and.. I would probably have needed to be sedated as well to be able to make it through that.
So I went home, and I reached out to others in the community, I asked if this was something standard for their condition and if this is a normal course of testing. All of the people who chose to respond told me that they had never had anesthesia for their eye exams and that they were concerned about the suggestion of the doctor. I wasn’t surprised, I feel like doctors these days will “up sell” where they feel there is opportunity to make their jobs easier and to make a little bit of extra money, with twins.. I’ve come to find, that this happens a lot – they are like walking dollar signs.
I called the doctor’s office and I let them know that I did some research and that I was not comfortable, as a parent.. to have my twins sedated for the eye exam. The nurse on the phone understood, and so I asked her (already knowing the answer to the first part,) “Is this something we can wait on, and if so.. can we do it without the anesthesia if they are older?” The nurse replied, of course. My next question gave me an answer that blew my mind. I asked, at what age can we do the exam without anesthesia. The nurse says “We can do the exam at 12 months” Doing the math in my head, I realized that the twins would be 12 months old in 5 weeks. Instead of waiting just 5 weeks, the doctors wanted to put them under anesthesia which carries serious risks, instead of waiting where there would be no risks.
& that is why we need Moms.
“Weren’t you afraid to reject the doctor’s suggestion?”
I wasn’t afraid to tell the doctor no, because I was confident in my research. I hadn’t found a case within the community of thousands of people.. Where a child was put under anesthesia for their eye exam with this condition. Most doctors felt that because the child’s treatment didn’t change with the eye exam, that it was not necessary.
(because waiting is safe, waiting has no risks.)
I feel that it is my JOB as a parent to do the research, and most of the time it isn’t just research, it is common sense & it comes down to the fact that… their condition is not a medical emergency in this case, the results will not change their treatment either way, I decided to be patient and wait. We will wait until it is time for the boys to show us what was going on with their eyes.
it’s called a care team
I think a lot of the time… we go into these appointments with the idea that our doctors will steer us in the right direction, we want to trust them. For the most part, that has been my experience but this time it wasn’t. I feel as though we were totally misguided and were given a suggestion that didn’t fit our diagnosis at all. I had to be strong, and advocate for my children I had to do the research and draw my own conclusion, ask questions and make sure that I as a parent am doing right by my babies so that they can live a good life, until the end.. long after I am gone. What we do for them now is what paves the foundation for their entire life.
When I was asked if I was afraid to tell the doctor no, I remembered what I had heard about, that in places like Arizona.. medical kidnapping is a very real thing. There are currently two children’s hospitals that are accused of having local law enforcement escort the parents off of the premises when the doctors are questioned, so that they can assume temporary legal guardianship of the admitted children. This is not okay and it is something that I do worry about, but I am willing to fight for my boys and to make rational medical decisions. When the twins were in the NICU they were sedated, this was to save their life and therefore it was necessary, but for an eye exam?
No thank you.
how your child is treated for a medical condition should be a collaborative effort, a partnership between the members of their care team, that includes YOU.
Sometimes we just have to remember that people want to feel as important as they are. Doctors need to know that you trust them, they also need to know that you are smart and that you love your baby.